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#Autism: The guilt of special needs parenting

One of the things that I find very difficult to cope with as a special needs parent, is the endless guilt. When I talk about guilt in this post, I know that it’s not a rational feeling but it’s always there and feels just as bad. Raising three boys on the #Autism Spectrum is by no means an easy task. I can’t tell you how many times I reach a point where I don’t believe that I can go on. There is just so much that constantly happens and nothing is ever a simple fix. It’s exhausting to say the absolute least.

While the exhaustion is well, exhausting, it’s not what troubles me the most. 

What troubles me the most is the endless amount of guilt I feel for not doing better. This guilt is present every second of every minute of every hour of every single day. Perhaps that sounds dramatic to some but I assure you it’s the truth, at least my truth. I’m human and I can only deal with so much at a time. I can also only deal with so much, for so long. After awhile, it becomes harder and harder to get up in the morning. It becomes more and more difficult to maintain hope that a better day will come.

People on the outside can’t understand what this is like. It’s not their fault either. It’s like trying to understand what it feels like to be dying of some horrible disease, when you aren’t. That not your fault either. This is just one of those things that you have to experience to understand. When I say that, I don’t mean it as a slam or put down either, it’s just one of those things.

I’m going to share a personal story, in order to help you better understand where this guilt comes from.

My story, my truth

My youngest child with Autism, Emmett, has become more and more difficult to live with. I love Emmett more than I could ever express in words, however, his behaviors, as of late, are just more than what I able to handle and push me closer and closer to the brink of insanity. It’s pretty safe to say that his behaviors affect his brothers and my wife in a similar way, however, in this post I’m speaking only for myself.

Emmett is severely speech and language delayed. This makes communication a constant struggle as well as a constant source of frustration for everyone, especially Emmett.  I can’t imagine what it’s like to be scared, angry, in pain or just hungry and not be able to convey that to those who could provide you with relief from those things. I don’t think frustrating even comes close or does it justice.

Over the past year or so, Emmett has made great strides in this area and is now basically able to carry on very basic, very limited conversations. I have become pretty fluent in Emmett’s means of communication, but it’s not easy. There are some things that he can communicate very well and many, many more that he can’t.

This, in and of itself, would be challenging enough on the very best of days. However, when you add two other boys with Autism to the mix, it becomes a struggle that I honestly can’t begin to describe. Emmett, over the past several months has begun presenting with more and more Autistic traits. He has become a perfectionist to the point of crippling his life. Everything has to be perfect of Emmett simply can’t move forward. Things like, breakfast, lunch and dinner typically involve blood curdling screaming, until we can figure out what he wants. Even when we manage to figure out what he wants, the challenge is often just beginning. We still have to get him to eat. If his food isn’t perfect or he perceives an imperfection….well…Houston, we have a problem.

He has also become very, very aggressive with his brothers, my wife (his mother) and even the dogs. He goes out of his way to cause trouble. Emmett will run upstairs simply to trash the rooms belonging to his brothers. He trashes their beds and empties their drawers.

I can’t figure out what the motive behind these things are. He gets plenty of positive attention, all the time.

His brothers don’t take this well and it sets into motion an unending cycle of chaos and screaming. It is so bad at times that we literally count the minutes to Friday evening, when he can possibly go to his grandparents house for the night. Last night was one of those Fridays that we long for all week.

The unending guilt

This is where the guilt comes in to play it’s nasty little game with me. I actually reach a point where I can’t wait until he’s gone. I so desperately need the screaming, fighting and chaos to stop that I actually look forward to him leaving. Most of the time, he loves going and his grandparents love to spend time with him. However,    there are times that he doesn’t want to go and I send him anyway. I know he’s going to have a good time once he’s  there and the rest of the Lost and Tired family, including myself, needs the break from his behaviors.

I always feel like a monster sending him away. I feel guilty for not having more patience with his behaviors and not having the strength to cope better without requiring him to leave.

I realize that this is an irrational guilt but it’s guilt nonetheless. The simple fact that I enjoy the time basking in a much quieter, more peaceful and less chaotic house, makes me feel even more guilty. I know it doesn’t make sense but at the same time, it does.

When the phone call comes the next morning, to let us know he’s on his way back, I always have mixed feelings. I do miss Emmett while he’s gone. What  I don’t miss however, is his behaviors. Unfortunately, at this point, Emmett and his behaviors are a package deal. In other words, I can’t have one with out the other and that’s where the mixed feelings come into play. I’m excited to see and hug my little Emmett John but at the same time, I know that everything is going to pick right back up where it left off.

It’s only a matter of time before the fighting, screaming and chaos takes hold of the Lost and Tired family once again.

It seems that each and every time this happens, I’m left with less and less, patients and ability to cope. The seconds, minutes, hours and days become much longer. I will reach a point where I even become resentful because of how these behavioral problems negatively affect my family, especially Lizze. The stress, noise and chaos, make what Lizze is already going through, that much worse. It’s not like when everything slows down, she gets better. All of this has an accumulative affect on her health.

The reality is that Emmett’s behaviors are not the only one to blame here. Elliott’s constant anxiety adds a great deal to the mix as does everything that Gavin has going on, which is a lot.  I just choose to focus on one aspect of this for the purposes of this post.

As a father, I can’t tell you just how horrible I feel when I experience the feelings of resentment. I know that I’m only human and that it’s perfectly normal to feel that way, especially when faced with the struggles that I am faced with, every single day of my life. Having said that, I’m not absolved of any guilt. I still feel like a bad father or a failure as a parent when I get to this point.

The reality of the situation

After me writing everything above and after you have finished reading it, we are left with reality. As a special needs father, I prefer to always deal with the reality of a situation. I would rather know what I’m up against than constantly wonder whats around the next corner.

For me, the reality of the special needs parenting situation is that nothing is ever going to be easy.  Life is always going to be a cornucopia of challenges, heartache, setbacks, steps forward and even the occasional victory. I don’t think that I was created with limitless ability, patience or resources needed to better cope. In fact, I know I wasn’t. Despite having a job that often requires superhuman abilities, I only human and therefore can only do so much.

I have found that guilt is going to be an inevitable part of my journey. Whether the guilt is warranted or not, it will more than likely, always be there.

No matter how much I put into this journey, I will always end up a day late and a dollar short. However, it won’t be for lack of trying, that much I can swear to. I have to learn to understand and even embrace my limitations. They aren’t necessarily a sign of weakness or failure. In fact, it’s entirely possible these limitations are in place for a reason. Maybe they help to keep me centered and in check.

Honestly, if these limitations were not there, I would have probably run myself into the ground, far worse than I already have, trying to do and be, everything for my family. These limitations, force me to stop and take care of myself, otherwise I would likely never stop. Perhaps it’s like a checks and balances kinda thing.

Regardless of anything, the guilt still remains, because I love my family and I know they deserve so much more than I can do for them. While I don’t relish the idea of always feeling guilty, it’s going to be one of those crosses I have to bare. Maybe someday, I can find a way to cut myself some slack. However, until then, I just have to keep on keeping on.